Pull up a Chair: Time in an MS Clinic
How many of you reading this go to an infusion center and have IVIG, Rituxan, Tysabri or any of the other intravenously administered drugs given on a regular basis? I’ve been receiving IV infusions of Tysabri for 3.5 years at the rate of every 28 days. That’s a lot of time to sit in the infusion center part of the MS clinic – you can figure for the average Tysabri infusion you are going to be there for about 2.5 hours. You must allot one hour for the IV drip of the drug, a second hour for the mandatory post-infusion observation period and the extra time thrown in at the beginning for paperwork and getting the IV line in. I’m not an easy stick with those needles, so sometimes it takes a good 10-15 minutes of sitting with heat packs on my arms to get the veins to show themselves. I think IVIG is a four hour process every two weeks, and I don’t know how long Rituxan or the other drugs might take.
The point I’m getting to is I spend a lot of time in the infusion clinic and if you take any multiple sclerosis drugs via IV, you do too. My time spent in the chair waiting for the time to pass is filled with a bit of reading or checking email on my computer and the remainder of the time is spent talking with the other people who are also clock watching. I can’t do too much with my hands, such as knitting or even typing, because that sets off the alarm on the IV drip machine. So talking with others is the best use of the time.
We’re a motley crew, and gathering together to compare notes and even just make small talk helps in many ways. What could be a miserable experience, sitting with an IV hooked up in my arm every 28 days, turns into a tolerable bit of time thanks to the other folks doing their own time in the chairs. This is definitely a prime example of how misery loves company.
Sometimes I see familiar faces in the clinic and other times it is someone new to me and maybe even new to the infusion process. Either way, it is the opportunity to visit, share stories and pass the time. There is an interesting spike in energy gathered from this social time just by being with other people who are experiencing the same ritual, before I have to go out and take on the span of time until the next infusion. There is the added bonus of temporarily setting aside the feeling of isolation or standing out in the crowd, because most everyone else in the room also has MS.
This time in the infusion clinic also gives me an opportunity to interact with the nursing staff, as they are always present and monitoring my infusions. After all these regular visits they become trusted medical advisors and also help the time to pass. We laugh and joke, and if my energy levels are good, I will try to bake them something special as a token of appreciation for the care they give to all of us.
I suspect, but can’t prove that this time in the infusion clinic may be about the only time many people with MS get to spend time with other people also with MS, and despite being a pain to set aside that much time each month, there are some real benefits besides just getting my drugs. I’m wondering what the infusion clinic situation is like for you – do you also get a sense of ‘we’re in this together’ or do you quietly go, get your drugs, and go home without much socializing. I hope you’ll pull up your chair and tell me a bit about your infusion clinic experiences – I have plenty of time to listen.
Wishing you well,
How do you feel before getting an MRI done?